April 2017 – Quarterly E-Newsletter

HNCANews Bulletin

April 2017

Dear Friends,

Thank you to all the 2017 Oral, Head and Neck Cancer Awareness Week® (OHANCAW®) screening sites and their volunteers! This screening/awareness program allows us to educate various communities worldwide about Oral, Head and Neck Cancer symptoms and SAVE LIVES by identifying people who need follow-up care. Highlights of 2017 OHANCAW® are featured in the below newsletter article, "Oral, Head and Neck Cancer Awareness Week® Expands Globally.”

ORAL, HEAD AND NECK CANCER PATIENTS ARE DIAGNOSED EACH DAY, PLEASE CONSIDER HOSTING AN EVENT ON ANOTHER DATE IN 2017. IF YOUR FACILITY WAS TOO BUSY IN EARLY APRIL, CONSIDER AN EVENT IN MAY, JUNE or PERHAPS THE FALL. SOME SITES HOST 2 EVENTS PER YEAR – SPRING AND SUMMER.

This past week, HNCA received over 30 calls from patients and caregivers regarding treatment questions, financial support, referrals and unfortunately some about hosting memorial tributes. Each call demonstrated why our organization exists and the increased need for early diagnosis, new treatments and more research.

Oral, Head and Neck Cancer Awareness Week® Expands Globally

The Head and Neck Cancer Alliance continues to grow and expand its annual Oral, Head and Neck Cancer Awareness Week® (OHANCAW®). The number of international sites participating has nearly doubled since 2016, and a record number of screening sites, both nationally as well as internationally, steadfastly promoted their respective screenings through social media channels, utilizing HNCA’s OHANCAW® Publicity Guide. The impact resulted in far-reaching education on oral, head and neck cancers throughout the U.S. and globally.

In all, more than 350 U.S. medical and dental clinics hosted OHANCAW® screenings. The majority of U.S. states were represented, and the states of Florida, Pennsylvania, and New York hosted the most screenings with 18.

The countries of Ghana, Moldova, and Pakistan joined 17 other international sites in organizing screenings. India hosted the most screenings, outside the U.S., with 15 sites offering free exams in their local communities.

“OHANCAW® is our cornerstone program, and its strength comes from the thousands of dedicated volunteers who are committed to serving their local communities and keeping them healthy,” said Dr. Terry Day, HNCA President. “Each year, OHANCAW® provides such a vital and important life-saving initiative, and our thanks goes to the staff and medical teams who are enthusiastically committed to reaching individuals who are in the early stages of the disease.”

NFL Hall of Famer Jim Kelly Teams Up With HNCA to Urge Others to Get Screened

NFL Hall of Fame Quarterback Jim Kelly continued his support of educating others about the vital importance of early detection. As an oral cancer survivor, Kelly teamed up with HNCA in urging others to get free screenings during OHANCAW® as well as April’s Oral Cancer Month. Kelly is the spokesperson for Your Cancer Game Plan (YCGP), and you can read more about the campaign in the Building Your Head and Neck Cancer Team article of this newsletter.

Penn State Honors OHANCAW®, its Patients and Survivors

In observance of OHANCAW®, The Penn State Health Milton S. Hershey Medical Center illuminated its Crescent Building in white and burgundy to bring broad general awareness and show support to its head and neck patients and survivors.

Mt. Sinai Experiences Record Turnout

During OHANCAW®, the Mount Sinai Health System hosted multiple days of free screenings. Each year, the OHANCAW® screenings take place at Mount Sinai Beth Israel and The Mount Sinai Hospital to raise further awareness of oral, head and neck cancers.

Located in New York City, the Mount Sinai staff screened a record 323 participants and referred 16% for follow-up care.

Unwavering Dedication from the Sindh Institute

The Sindh Institute of Oral Health Sciences, Karachi, Pakistan dedicated almost the entire OHANCAW® to raising awareness for oral, head and neck cancers, educating on the importance of early detection and offering six straight days of free screenings.

The Department of Oral and Maxillofacial Surgery staff dedicated 4.5 hours of their time each morning with the goal of screening as many individuals as possible, especially those at high-risk.

HNCA Focuses Messages on HPV-Related Oral Cancer

Through media relations, social media and public education efforts as well as webinar participation, HNCA raised awareness for Human Papillomavirus, HPV, as a major risk factor for oral cancers. HNCA offered social media messages and creative for The National HPV Vaccination Roundtable and all of its member organizations to post and tweet during April’s Oral Cancer Awareness Month.

HNCA Board Chair Dr. Terry Day was a featured expert in a Cance﻿﻿rCare.or﻿﻿g webinar workshop, Progress in the Treatment of Oral and Head and Neck Cancer. This workshop was offered in conjunction with OHANCAW®.

On Friday of OHANCAW®, Dr. Day, presented a session on the understanding the science, evidence and trends of mouth and throat cancer, caused by HPV during an hour-long National HPV Vaccination Roundtable webinar. Dr. Day emphasized the importance of the HPV vaccination to reduce cancer incidence.

National Center For Health Statistics Releases New HPV data

During OHANCAW®, The National Center for Health Statistics released its latest data on HPV, the most common sexually transmitted infection in the U.S. National and international media outlets also reported on the latest findings, working to further draw attention to HPV-related oral cancers.

Some experts believe 70 percent of all head and neck cancers are caused by HPV, likely spread by oral sex. According to experts, by 2020, head and neck cancer will overtake cervical cancer as the most common HPV-related cancer.

Cooking steps:

Heat the olive oil in a large pot over medium heat. Add the onion, carrots and garlic, sauté for one minute.

Add the tomatoes, stock and white beans. Bring to a boil, then lower the heat to a simmer. Cover and cook for about 15 minutes.

Add the orzo, and simmer the soup for about 10 minutes or until the orzo becomes tender. Add the kale, and cook for one to two minutes more. Season to taste with salt and pepper.

To serve, ladle a generous portion of soup into each bowl.

Top with freshly grated parmesan, if using.

Savor Health is a provider of personalized nutritional solutions designed specifically for cancer patients and their caregivers.

Editor's Tip: For easier consumption, cut vegetables into smaller than bite size pieces. If you never had orzo before, it will expand a bit when cooked and is slightly bigger than cooked rice grains but not as soft. If you are not sure you will be able to swallow the orzo, cook a little to test it out. If you find it difficult to to eat, break the orzo in half before adding into the soup.

Don "Fight's On"

I am wonderfully blessed. I have a beautiful, loving wife of 47-years, two tax-paying productive children and their spouses, three brilliant and beautiful granddaughters, and am a long-term head and neck cancer survivor!

This time 11 years ago, I was beginning seven weeks of twice weekly chemo (Cisplatin and Docetaxol) and daily radiation treatments (a cumulative 70 grey, using Intensity Modulated Radiation Therapy) for squamous cell carcinoma at the base of tongue. I had awoken around Christmas, about four months earlier, with what I thought was a sore and swollen lymph node in the neck. That lymph node turned out to be a tumor and, surprisingly, it had a twin hidden on the other side of my neck. The primary tumor was at the left base of my tongue.

As anyone who has had a head-and-neck cancer very likely will tell you, cancer categorized as “head and neck” does not get the attention that it should. While not in the category of “most common” cancers, it is among the most debilitating and deadly. Head and Neck Cancers are often very difficult to detect and to diagnose. That is why it is almost always advanced—either Stage 3 or Stage 4—when diagnosed. Mine was Stage 4.

To illustrate how deceptive head and neck cancers can be, the morning that I awoke with the soreness in the neck was the only time I had any soreness at all. The “swollen node” was there the next day, but the soreness was gone. If I had ignored and not followed up on what caused the soreness, I am pretty certain I would not be sitting at my computer this evening writing this article for your perusal. Even after immediately beginning to pursue the cause of that sore and swollen lymph node, it still took three months to get a diagnosis.

Head and Neck Cancers are described as “insidious,” and are, in the opinion of many medical professionals, among the most painful of any cancers to treat. To help me prepare for the onslaught, I asked my doctors to give me the worst case scenario regarding the effects of the chemo and radiation, and they did. When Dr. Andrea McMurphy, my ENT, gave me the cancer diagnosis, she had told me the treatment would be extremely painful and that my mouth would be “bloody and raw.” Whereas, my Radiation Oncologist, Dr. Joseph Bonnano, told me, “There will be some pain and burning”, my Chemo Oncologist, Dr. Robert Prieto, pulled no punches. He told me, “The pain will be so bad you won’t want to swallow a tear. The pain will also be so bad morphine won’t kill it.” With that knowledge, I approached treatment with trepidation.

While I experienced the expected effects to a degree, the full brunt of what my doctors told me to expect never materialized. In fact, the effects I experienced were so minimal that every doctor who touched me during my treatment considered me to be an anomaly. Dr. Bonnano half-jokingly told me he was going to make me the poster child for the 21st Century Oncology clinic.

Unlike other head and neck cancer patients I have come into contact with, I came through treatment and recovery relatively unscathed. Were it not for two “hot spots” showing up on the PET/CT I received after completing treatment, and the subsequent lymph node dissection on the right side of my neck, you would never know anything had been amiss. Over time, saliva production is pretty normal. Thus, no dry mouth. Taste buds are restored. No oral health problems exist and I can open my mouth wide enough to put three fingers vertically into it.

As I sat in our cancer support group, which was comprised of mostly head and neck cancer patients, I could not help but reflect on how I came through with so few problems and lingering effects, while others suffered so horribly. I almost had guilt feelings.

Those same thoughts were again pondered as I attended the funerals of Marv, Amy, Kirk and others who passed either because all of their cancer was not destroyed during treatment, or whose cancer could not be completely excised during surgery, or who had a recurrence of their cancer. One of whom had a recurrence just after passing the five-year mark.

To those who asked me the question regarding how I fared so well when others suffered so much and eventually died, the response I offered was, “Good doctors. Good medicine. The good Lord. Not necessarily in that order.”

While undergoing cancer treatment, I chronicled my experience by sending e-mail notes, initially, to a small group of family and friends. My initial intimate sharing mushroomed, because many of them, in turn, shared those notes far-and-wide. What started out as a small number, ultimately resulted in an e-mail list of approximately 250 people receiving my cancer updates. Several who received my updates told me, “Don, you have a story to tell. I hope you will write a book about your experience and include your e-mail updates!”

I had two goals in mind when I was writing those periodic updates. Those goals were: (1) to encourage people to pray for me and; (2) to force myself to confront my cancer and its treatment head-on. While going through treatment, there was never the first thought of writing a book. However, the seed had been sown and it eventually took root.

About five years after completing treatment, I compiled a manuscript with those e-mail updates as the basis. I also included several of the e-mails I received in response to those updates, along with my reply, to enable the reader to see a bit more of what was going on behind the scene. I also used this as an opportunity to add additional detail where appropriate.

After my editor returned the manuscript, I looked at the amount of work required to finish it, and promptly put the manuscript in a drawer. It remained there for considerable time. Last spring I retrieved the manuscript, finished it and then self-published the book on Amazon. It was extremely well reviewed—35/36 Amazon reader reviews were 5-Star. The other was 4-Star.

Just as there were two goals in sending out those periodic updates, there were two goals which motivated me to write the book: (1) to share my personal story and the power of prayer; and (2) to focus attention on this hideous disease called “Head-and-Neck Cancer”. The latter goal is partially achieved simply through the book’s title: Head-and-Neck Cancer Kills….”Fight’s On!!!”

The book is no longer available on Amazon. I recently signed a publishing contract with Christian Faith Publishing and the book is being edited to conform to the publisher’s standards. I am told it will take 4-6 months to complete the publishing process. (If you wish to know when Head-and-Neck Cancer Kills….”Fight’s On!!!” becomes available, please e-mail me at sublettd@gmail.com and make the subject “Book Availability”. I will be glad to contact you!)

Since completing treatment, my doctors have occasionally asked me to mentor and share my personal story with a significant number of head and neck cancer patients, helping to gird them for the battle they would experience—as well as to show them that it is possible to beat this disease and live a normal life. Even if it is a “new normal”, because no one who battles any Stage 4 cancer will ever revert to the “normal” that existed prior to their cancer battle. I have also had opportunity to speak to different audiences about my cancer experience. Because of my outspokenness about knowing our body, paying attention when there are changes, and getting those changes checked by a doctor, I have been able to help focus attention on cancer awareness, especially on cancers of the head and neck.

I recently received a dose of my own medicine regarding paying attention to any change in the body and getting it checked. I was having a “hanging sensation” in the back of my throat. I am all too aware that a hanging sensation is one of the signs of a potential head and neck cancer. Believe me, I did not want to make the ENT appointment to be scoped! However, after much mental wrangling, I made the appointment and went for the exam. “Everything looks normal” is a marvelous phrase. However, I will continue to be alert to changes within my body. You should, too!

Several years ago, I was told by a friend who succumbed to throat cancer, “Don, once a cancer patient, always a cancer patient.” What my friend, Steve, told me has considerable merit, because there is constant awareness in the cancer patient of just how much havoc cancer can wreak and how fragile life is.

Every day is a genuine blessing!

Family and Friends Pays Tribute to Beloved Husband by Joining Him in His Last Round of Golf

With only a month to plan a charity golf event and diagnosed with terminal cancer, Jeff Park and his loved ones successfully hosted a golf tournament in early December 2016, raising an estimated $14,000 with the proceeds donated to the Head and Neck Cancer Alliance (HNCA).

Laura, Jeff’s wife, wanted him to have one more chance to play his cherished golf game before he became too ill. She and Jeff collaborated with all of their close friends and quickly organized a fundraising golf tournament.

Within weeks, they were able to recruit 94 golfers and 25 volunteers to participate in the Inaugural Jeff Park Heads Up Golf Tournament, held at the Forest Lake Golf Club in Apopka, Florida.

Jeff, known for his selfless nature, chose as one his final efforts to dedicate his precious days to raise awareness and needed funding for cancer research. He hoped by doing so, that he played a role in alleviating future suffering of others. He was always passionate about research, education and screenings for oral, head and neck cancers. Jeff also advocated for screenings in the hopes that it would save more lives.

Jeff experienced four recurrences with oral, head and neck cancers. First diagnosed in 2011, at age 39, with HPV-related tongue cancer, he eventually underwent radical surgery to remove his tongue. By late 2016, he was terminal with cancer spreading throughout his neck, throat and jaw.

The Head and Neck Cancer Alliance pays tribute to Jeff, the entire Park family and friends for their generosity and desire to support HNCA.

On February 5, 2017, Jeff peacefully passed away. His passion for golf, love of family and contributions to raising awareness, supporting research and advocating for early screening will always be remembered.

Building Your Head

and Neck Cancer Team

Many people living with head and neck cancer may experience different physical and emotional challenges than people with other forms of cancer. That’s why education and support are so important.

Your Cancer Game Plan is a new awareness campaign focused on helping people with cancer and their loved ones tackle their emotional, nutritional and communication needs, and encouraging people to make a “game plan” to support their cancer journey. The campaign is a collaboration between Merck, Pro Football Hall of Famer and head and neck cancer survivor Jim Kelly, Head & Neck Cancer Alliance (HNCA) and Support for People with Oral and Head and Neck Cancer (SPOHNC), and Savor Health, a service dedicated to supporting the nutritional needs of people living with cancer.

One of the major focuses of Your Cancer Game Plan is the importance of finding the support that is right for you. You need to build your own team. Find people who can relate to what you are going through, including counselors, support groups and online communities. And, talk to loved ones and family.

Jim Kelly has always felt the importance of these support systems: “I had what I like to call my four F's: my family, my faith, my fans and my friends. I've been very blessed to have that kind of support, but there's a lot of people out there that don't. Nobody should go through head and neck cancer alone, and everyone – including caregivers – can benefit from the advice and wisdom of others who have gone through this before.”

We encourage you to visit the campaign’s online hub www.YourCancerGamePlan.com for additional support and resources. You can also learn more on Twitter using #CancerGamePlan.

Get Involved and Support Our Efforts

YOU have the power to help fund research, raise awareness and advocate for access to care.

Interested in contributing your time or supporting HNCA? We offer numerous opportunities to get involved:

Organize an event in your community;

Become a Corporate Partner of events and/or patient-focused or clinician education programs;

Be sure to add our email address to your address book or safe senders list so our emails get to your inbox.

Any products and manufacturers included on this site are presented for informational purposes only and do not constitute product approval or endorsement by HNCA. The content provided by HNCA is in no way intended to be a substitute for medical consultation with a qualified professional. HNCA encourages those using its resources to be careful when evaluating medical information or products. If you are unsure about your medical condition, consult a physician.

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